My name is Eve and I’m the Activism Campaigns Manager at Mencap. It’s my job to make sure we have lots of exciting, accessible ways for campaigners around the country to get involved in our signature campaigns.

At the moment, our big focus is health. We launched Treat me well in February 2018 with the aim of transforming how the NHS treats people with a learning disability in hospital. It’s really easy to get involved, and there’s a role for absolutely everyone.

How to get started

Anyone can be a campaigner. If you’re interested in campaigning with Mencap on health issues, why not join our Treat me well campaign? Here are some top tips for getting started:

Sign up to support the campaign here: http://www.mencap.org.uk/TMW. If you opt in to hear from us by email, you’ll get all the latest campaign updates straight to your inbox.

Check out our two new videos, made in partnership with The Makaton Charity. The first video is about the Treat me well campaign. The second video is about campaigning. Please watch these with anyone you know who uses Makaton.

Ask me questions about campaigning

I’m here throughout Activism Week (15 October to 21 October 2018) to answer your questions about activism, campaigning and Treat me well – these might include:

I would summarise my top tips for campaigning as the three P’s; persistence, politeness, proof.

Persistence - the most important quality. Never give up.

Politeness - don’t give people an excuse to ignore you, which they may do if you are aggressive or rude.

Proof - always put your communications in writing and keep copies. Members of staff leave over time, but you will always be there with the evidence.

I have been fighting battles for my son James since he was born 19 years ago. Those battles take place on all fronts, because he has multiple disabilities. But the health service is the one I now find the most difficult to deal with.

One of the biggest challenges we face is to ensure that James has a working wheelchair. He is taller than me and weighs 80kg. Without a wheelchair he is virtually stranded in bed. He has a powered chair which he drives himself and that chair is both his legs and his voice. If he is feeling overwhelmed in a crowded room he can just drive out of the door.

He does give the chair quite a bashing; he bites lumps out of the head rest, and when he is excited, bucks in his seat like a rodeo cowboy. However, it’s not his fault and he does not deserve to wait for weeks for the chair to be repaired when it stops working, which used to be often.

We campaiged because we speak for Josh and Josh wasn’t being listened to. He needed care closer to home and his family. He needed the bespoke care he has now, and the proof is his vast improvement both physically and emotionally since returning home to Cornwall.

My latest film uploaded yesterday especially for his birthday shows a young man with severe Autism living the life that he needs and deserves and is his right.

All children and adults like Josh are better at home or close to home, and free from medication. Josh is now on no medication and it has improved him greatly.

Since losing my precious son Nick in the most appalling circumstances I have campaigned unrelentingly for Lessons to be learnt from his death and actioned.
After almost 4 years I finally had the opportunity to meet with the CEO of the hospital where Nick and Oliver McGowan both died avoidable premature deaths. I outlined most of the failings in the care given to Nick and challenged the hospital policies regarding restraint. Nick was subjected to having his wrists tied to his bed and worse still a nasal bridle was inserted into his nose to prevent him from removing his naso- gastric tube this was done without our knowledge or consent and no DOLs in place.
It was evident that staff had not been trained to cope with a patient who had LD and Autism they lacked the competencies skills compassion.
As a tribute to Nick I am campaigning for Training for all Healthcare Professionals.
I am working with the CEO and Head of Nursing to ensure that effective training and measures are implemented to protect all vulnerable patients.
This is Nick’s legacy - no other family must ever endure the heartache of losing a loved one through gross neglect.
Mencap’s “Treat Me Well” campaign must influence radical change in all hospitals.
I urge you to fill in the template on the site and send it to your CEO of your local hospital.
We must stop 1.200 deaths of patients with LD in our hospitals now!

I met another brilliant family campaigner from Islington called Jean Willson yesterday. Before her daughter Victoria passed away, she spent 45 years campaigning for all sorts of things to make Victoria’s life better. Her motto is ‘ask, but ask with a smile’! Especially in the NHS, she says people just switch off and call you ‘aggressive’ if you get angry.

So yes, I agree with your ‘persistence, politeness and proof’ top tips!

My experience of campaigning has been a Judicial Review to try and reverse a decision made by my Local Authority (LA), Surrey, without consultation with families and carers, to cut almost £21 million from the Special Educational Needs and Disabilities (SEND) budget.

As a parent of a child with SEND, I have seen the impact of the continued lack of educational support on the mental health of many children and young people and also their parents and carers.

To understand if your LA is planning cuts, you can look on their website and search under consultations. Although, if you really want to be sure of what is happening locally, it’s best to keep an eye on what is happening at Council meetings and/or Cabinet meetings, as if your LA, like mine, doesn’t consult then this is the only way you’ll find out.

In our case, it was the diligence of a young local journalist who raised the issue of cuts otherwise we would have been in the dark until they hit.

You should also look out for other cuts to services such as day centres as these should also pass through consultation and if not will undoubtedly be discussed at Council meetings. All these things can be challenged.

So my 3 top tips would be:

Check the consultations on your LA website at least every couple of weeks.

Check the LA Council/Cabinet meeting minutes for any budget discussions.

Spread the word.

If you suspect you may have cuts coming your way and need to find out about Crowdfunding or the process to challenge them, please contact me via our Facebook page: Reverse Surrey SEN Cuts or on Twitter @SurreySENCuts

You make a really good point about involving your MP. It is absolutely their job to support their constituents with their concerns.

In fact, sometimes campaigners find that their MP not only gives them useful input on their particular case, but also becomes really involved and invested in the bigger issue. From there, they become a useful advocate in Parliament, and end up making new legislation which can change things for disabled people all around the country. So yes, it’s definitely a good idea to enlist your MP.

You’re right also about meeting people face to face. It’s much harder for decision makers to say no when they are right in front of you!

Your experience challenging cuts sounds very typical. The cuts are often planned and then implemented very much ‘in the dark’, as you say, without consultation or publicity. You are lucky to have a local journalist with a strong interest in this! Cuts in other areas often fail to make the news at all.

It’s great that you are so organised in Surrey and can give tips to people in other areas. We are often told by lawyers that we work with to use the ‘smell test’. If what is happening locally ‘smells bad’, there’s usually something illegal going on, so don’t hesitate to involve lawyers!

Good luck to you at Reverse Surrey SEN Cuts - you are doing an incredibly important job.

Thank you to everyone who took part in this thread! I feel like we have covered a huge amount - from campaigns like @Willsey73’s to get his son Josh out of an assessment and treatment unit, to groups like @Alicia12’s Reverse Surrey SEN Cuts group looking at funding cuts.

Remember, if you are in immediate difficulty and need some expert advice please call the Mencap Helpline on 0808 808 1111. If you want support with getting a campaign off the ground, please contact campaigns@mencap.org.uk or call me on 020 7696 5597 and I would be happy to help.